Betcha’ you can’t spell it backwards!

Sometimes having Cowden Syndrome is a huuuge drag.  I mean, a big freaking drag.  Wrought with doctor appointments and scans a plenty, but that’s the nature of the beast.  To, “make sure I’m watched closely if something arises.”  You know, it’s funny because just last week I was thinking that things had been pretty quiet lately on the medical front.

Dun dun dun…

Oh, and I also want to add:  In case any of you are wondering still if I’m using Cowden Syndrome and Lhermitte-duclos Disease as an excuse to not live life, or why I don’t schedule all my appointments during the summer so I can teach, this is why.  When things come up, they come up.  I can’t say to my oncologist, “Oh sorry.  This isn’t convenient for me.”  I have to make my schedule conform to their schedule, plain and simple.  That’s just how it works when you have a hereditary cancer syndromeDeal. With. It.  (This is mainly for my ex-friend who verbally attacked me a few months ago with all this garbage.)  🙂

I saw my oncologist on Friday…

  • I had a kidney ultrasound on Thursday; the last one I had was April 2014.  That one was unremarkable from what I remember.  This one?  Not so much.  Dr. L said I have a lump/bump on my left kidney.  She didn’t mention the “C” word initially, but when I asked her about it she said she didn’t know.  She named all sorts of things it could be (even technician “technique”) but I find that very interesting when the radiologist named it in her report.  An angiomyolipoma.  I’ve been told by a few people that lipomas are usually benign, and that’s a big sigh of relief.  But, I’m really really really really really trying to not turn myself into a pretzel.  Worst and best case scenarios, right?  I think I was given all of it, but the little inkling in the back of my mind is nervous.  Let’s be honest.  So, my doctor is calling for a repeat kidney scan this coming Thursday.  My heart is beating fast, but I’m remembering to breathe.  Breathing is the only thing I can do right now anyway.
  • Dr. L is sending me to an oncological surgeon because of the EGD I had a few months ago.  I had “multiple polyps” in my esophagus and I guess that raised a bunch of red flags to some people. (Ha.)  I’m not sure what this appointment will entail, but all I know is next week I’m going to be super busy a just a tad nervous.  Overwhelmed?  Well, maybe.  But, I just can remind myself this isn’t brain surgeries and I “got this”.  🙂

The moral to this story is Cowden Syndrome sucks rocks, and it manifests so differently in so many people.  I have LDD, but not everyone I know with CS has LDD.  I may/may not have kidney issues (it is 33% lifetime risk of kidney cancer BTW with CS), so whatever will be will be.  I say that today with all honesty and openness, but I don’t know if I can hold that till Wednesday morning.  We’ll see.  The point is that I can’t give up.  I won’t give up.  I guess someone can be both scared and peaceful at the same time?

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One thought on “Betcha’ you can’t spell it backwards!

  1. It does suck! But, thanks for the post, such an interesting read. My daughter has Beckwith Weidemann syndrome (another super rare one) and has to have a kidney scan every 12 weeks to check for Wilms tumour, which they are more susceptible too. That sucks majorly too. But, glad she gets the care and attention she needs!!

    Sending positive thoughts your way 🙂

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